Rare Disease Day

I had never heard of Rare Disease Day. Rare diseases used to be an abstract concept reserved for unfortunate people elsewhere. Now the 28th of February is marked in my calendar- an unusual date used to mark an odd day. Our family is new to the Rare Disease community, and we don’t know the rulesContinue reading “Rare Disease Day”

Writer’s Block

I haven’t posted on the blog for a while. An author might call it writer’s block, but my block was not of the writing kind. Shaina has got her mischievous smile back in the last few days. The haze in my brain seems to be clearing as her personality reemerges. You know Shaina- in personContinue reading “Writer’s Block”

Wedding anniversary crashers

Please G-d, Naomi and I hope to celebrate our wedding anniversary later this week. Hope? Well, the date is secured on the calendar, but last year taught us that the celebration isn’t guaranteed. Besides, Shaina is currently sedated and in ICU after her scheduled sleep tests and annual EEG didn’t work out as planned. LastContinue reading “Wedding anniversary crashers”

A medical crisis out of nowhere

Pesach 2020 was unlike any Pesach our family had experienced. In addition to the typical frenetic pre-Pesach prep, we worked hard to ensure that everyone in our community had their Pesach needs. We set up a Covid-friendly system for people to collect the hand-baked shemura matzos we’d usually distribute before Pesach. We packaged seder-to-go packs. And weContinue reading “A medical crisis out of nowhere”